The question this week is exactly the kind of question I do not ever want to answer. It might be a question nobody wants to answer unless they are a medical researcher with skin in the game, so to speak.
“If you could choose one — and only one — particular malady, condition, or disease for which a safe and effective treatment was available, what one condition would you choose to treat and why is that your choice?”
As someone with more maladies than I care to list, some likely to kill me, others just likely to be a serious pain in my back, exactly how would I pick?
I have absolutely no idea what I should pick. Cancer? It has managed to kill about three-quarters of my closest family. Heart disease took the rest — and I’ve already had both, big time. Or maybe I should vote for arthritis? Unlikely to kill me, but very likely to make living increasingly unpleasant.
I’m pretty sure they are doing significant research on all of these diseases. Cure them? Who knows? But they have come a very long way in treating both cancer and heart disease. Arthritis lags behind, likely for a couple of obvious reasons the first being that almost everyone gets it.
It probably is not preventable unless old age is preventable. Also, it isn’t lethal, which means it doesn’t generate the money for “cures” that more fatal diseases garner.
I’ve got it! Let’s cure aging!
I don’t mind going gray or wrinkly. But let’s dump arthritis, exhaustion, bad hips, worn-out knees, loss of memory, and insomnia. While we are at it, cure dementia and Alzheimer’s. Add a little zip to our steps so we can be old, wise, and energetic. So we can still be who we have always been — right up until that last breath.
And please, while you are at this curing business, make sure everyone has full access to medical care, no matter what is wrong with them.
My first husband, Larry, was bipolar, but he wasn’t diagnosed until thirteen years into our 25-year marriage. However, the ups and downs were a part of my life from the beginning. Larry could be fun, smart and affectionate. He had a wicked sense of humor (including clever puns), tremendous energy (sometimes too much, manic energy), a great “joie” and endless enthusiasm.
He loved to read and was interested in a wide variety of subjects, ranging from physics and biology to history and sociology, to law and mysteries. He also loved the arts, particularly the theater and at one point we had five theater subscriptions at the same time. In addition, we also went to Broadway shows quite often, which kept us very busy and very up to date on the theater scene of the day.
Larry and me when we were first married
Larry a few years later
One of Larry’s passions was shopping and when manic, he was a true shopaholic. He couldn’t resist buying anything that tickled his fancy, which was a lot of stuff. On the other hand, I loved it when Larry would shop with me in my favorite stores; craft shops, art galleries and jewelry and clothes stores. He would even come into the dressing room with me and help me pick out what clothes to buy. He had wonderful and sophisticated taste, though his taste was often a lot bolder and flashier than mine.
I really shouldn’t complain, because Larry loved to buy things for me. However, when he was manic, he would overspend and buy everything in sight. I was in charge of the budget and it was frustrating to see all my budgeting and saving go out the window with Larry’s shopping sprees. It got to the point that I would pretend that I didn’t like things we looked at because if I said I liked it, it would be mine in no time flat!
Once my son, David, then around twelve, went to an electronics store with Larry. Before they left, I pulled David aside and instructed him to try to keep his father’s purchases down. They returned with not one, but two VCR’s and I asked David why he had failed to rein in his dad. “Hey!” he said. “I talked him down from three, so don’t complain!”
Another positive side to Larry’s love of shopping was that he was always an active partner with me in decorating our homes, helping me choose everything from wallpapers and fabrics, to furniture and window treatments to bathroom fixtures and door knobs. We also designed our house in Easton, Connecticut together with the help of an architect. It was a wonderful, shared experience and the house meant so much more to both of us for the experience we had in creating every nook and cranny and picking every design element. I remember jumping out of bed late one night to draw out a new plan I had just thought of for the kitchen/breakfast room area. It was a wild idea and it was the design we eventually used in the house. I still love it 30 years later!
Larry exhibited his sense of humor and fun one Christmas when he and David, like many other Jews, went to the movies on Christmas day. Before the show started, as a joke, Larry stood up and started singing the Jewish classic “Havanegela”. To his delight, the rest of the audience joined in and Larry acted as conductor for the group sing-along!
Larry didn’t sleep much and was always on the go. I needed a lot of sleep and ample amounts of downtime, which created much conflict between us. On weekends, he would get up early and want to go out and do something, get something to eat or just window shop. David was also not a morning person so we would take turns appeasing a very persistent, and often annoying and inconsiderate Larry.
One day, when Sarah was about eighteen months old and couldn’t talk yet, Larry got up and started pestering David, who was six and a half, and me to go out with him. Suddenly, our toddler ran into her bedroom, grabbed her coat and then ran to the front door. It was her way of saying “Take me, Daddy! I want to play with you!” Now Larry had a new playmate for his early weekend excursions and David and I were thrilled! When Sarah could talk, she’d say to Larry, “Let’s go sopping!”
Larry and Sarah continued their ‘sopping’ trips for the rest of Larry’s life (he died shortly before Sarah’s 21st birthday). He and Sarah also traveled and went to lots of shows and movies together from early in Sarah’s life and it was something wonderful she shared with her dad. Those memories are important and comforting to her now.
Larry with Sarah at around 4
Larry with Sarah at around 11
But there was a dark side to Larry’s bipolar disorder. When he cycled manic, as he did every year or so, he became volatile, paranoid, angry and agitated. He would fly into rages about the slightest thing, real or imagined and he would become verbally abusive. To our frustration, he would often ‘forget’ these episodes as soon as he calmed down. He was what is called a “rapid cycler.”
A classic example of that syndrome happened one Thanksgiving when we were supposed to drive from New York to Larry’s sister in New Jersey. In the morning, Larry was curled up in a ball on the bed, refusing to even get up. I eventually got him up and we started to drive to New Jersey when he suddenly went berserk over something.
I don’t remember what it was on that occasion, but once the kids were making too much noise in the back seat of the car and once I left the dirty dishes in the sink. To Larry, that proved that I didn’t care about him, that he didn’t matter, that he wasn’t important to me and that I was a bitch.
On this Thanksgiving drive, Larry pulled the car over to the side of the street and stormed off, refusing to come back to the car. David finally talked him down and got him back into the car, because, as usual, Larry refused to even talk to me. We eventually made it to New Jersey, but Larry had gone from paralyzing depression to raging mania in the course of one day.
Another holiday in New Jersey ended badly because of Larry’s manic overreactions. He stormed out of a lot of rooms, houses and cars over the years, often on major holidays with family. But this one was special, even for Larry.
We were playing a game with Larry’s sister, Robin and her family, my kids and Larry. Larry was being hyper-competitive and was trash talking everyone constantly, which I think he thought was funny. After asking him to stop several times, Robin finally got exasperated and told him to shut up and Larry snapped.
He stormed out of the house, but this time he took our car and disappeared. We eventually got a call saying he was at the train station and was taking a train back to New York, even though he was supposed to be going back to Connecticut with me and the kids for the long holiday weekend. Robin had to drive David to the train station so he could drive our car back to Robin’s so I could drive back to Connecticut with the kids. Robin talked to Larry at the station and they patched things up, but Larry still insisted on taking the train to New York, disrupting and appalling everyone. I was mortified and everyone else was shaken and upset. This was not an uncommon situation for me, but each time it happened, it was like a punch to the gut.
In some ways, it would have been easier for me if Larry had always been abusive and impossible to live with, but he wasn’t. He was eventually put on Lithium, which worked well and contained his mania, but he kept going off the meds.
I loved the non-manic Larry, so the hope that Larry would get help, and then that he would stay on his meds, kept me with him for 25 years.
Larry and me at his 40th birthday party
Larry and me on one of our numerous trips to California
A few years ago, I got to thinking about blood type. I wondered how come I have B+ blood when everyone in my family is O or A. I decided to go hunting on the Internet to see if I could learn something about where I come from using this tidbit of information.
It turns out, B-type people are universally less common than O and A.
It might mean I have some tidbit of Asian ancestry. Genghis Khan made serious inroads into Europe. Who knows where the seeds of his army were left?
The incidence of type B is low amongst Jews. Low everywhere, but not unheard of, nor so infrequent as to be rare. But low.
My mother was type O, the most common blood group everywhere. Among native peoples in the western hemisphere, type O is close to 100%. Many scientists theorize that “O” was the “original” human blood type and all other types mutated from it.
That’s one theory, anyhow. Blood types do mutate and occasionally even change completely following a transfusion.
This is a bit of a hot topic because some places, blood typing has been used to categorize people as inferior, notably Japan. There are always racists looking for a way to prove they are superior to everyone else. At least one study (I’m not sure I should dignify it with that name) claims people of B-type blood are descendants of Neanderthals while O and A descended from Cro-Magnon.
This is pure speculation. Not research.
Worse, there are pockets of racists who contend that A is the only pure Aryan blood type. What evidence did they base this on? None. Particularly interesting since O is the dominant blood type everywhere.
Overall in the world, B is the rarest ABO blood allele. Only 16% of humanity has it. It reaches its highest frequency in Central Asia and Northern India. It’s believed to have been entirely absent from Native American and Australian Aboriginal populations prior to the arrival of Europeans. However, there are relatively high-frequency pockets in Africa too.
B is not a dominant blood type anywhere. It is highest in the Philippines and Siberia, the lowest in the Americas. Very rare in the British Isles and Scandinavia. The highest percentage it reaches is 38% of the population and that is in the Philippines. In the Middle East, the ultimate melting pot, all the major blood types are more or less evenly divided in the population.
If this shows some kind of migratory pattern for our ancestors, no one can prove it. Not yet, anyway, but they are working on it. The Middle East is the land pathway between Africa, Europe, and Asia, so it makes sense that many types of people might make their homes there.
It turns out there is no universally accepted theory of the origins of man. Scientists and other theorists can’t even agree whether or not we all have the same progenitors.
So after all this, I don’t know much more than I did when I started. Clearly, there is something to be learned from the distribution of blood types in the world, but no one is certain of exactly what.
One of the possibilities of my “B” blood type is that my father was mistakenly typed and rather than A, was actually AB. But the truth is that blood types do sometimes pop up unexpectedly. There are lots of recessive traits lingering in us. My B+ blood has a number of unique qualities, which is why I have a blood donor card that specifies the unique other qualities of my blood.
In fact, the blood types we know – O, A, AB, B – in both positive and negative forms are not the whole of blood-typing. It gets a lot more complicated than most people realize, which is why there are whole hospitals dedicated to dealing with blood.
I think eventually blood typing will be one of the many ways we trace the movements of our Neolithic ancestors. Maybe even pre-Neolithic.
I’ve got a “sleepless” EEG (electroencephalogram) tomorrow morning. It means I can’t go to sleep until midnight and I have to be up by four in the morning and be at the hospital by eight in the morning. No caffeine, but I can have breakfast.
I don’t know how to have breakfast without coffee. What am I supposed to eat? Without coffee, am I supposed to cook? Like … food?
I suppose it will be something to do while I have to wait to leave for the hospital. Do I need to tell you how much I’m not looking forward to this?
So please do not be surprised if I don’t make comments in the morning or write much. I am likely to go back to bed. Quite probably Garry and I will both go back to bed. Except I will have to take a shower and wash my hair first because they use a kind of glop to attach the electrodes to my head and I have to wash it out or it will turn to cement and I might never get it out of my hair.
Meanwhile, no one has called to give me information about last week’s echocardiogram. I called the office and she pointed out if there was anything wrong, they would have called me. So I can assume if there is anything amiss, I’d already know it.
I guess I’ll stop worrying.
Now all I have to do is worry about surviving without coffee and getting the goop out of my hair.
It’s going to be a really terrific day. And a great night, too. I can hardly wait. The high point of this day was that the hospital called me — a human BEING called me — to remind me about the test. A real live person called and asked me if I was going to be there. I said yes and she said “Great!” We both hung up.
Wow. A living person called me. How often does THAT happen?
We have indeed been a little bit busy and more than a little pressed for time. Everything seems to happen at the same time. For me, all my medical stuff happens in March.
For reasons I don’t entirely understand, most of my major surgeries have occurred in March which is why I’ve spent so many birthdays in the hospital. It’s also why I have so many physical work-ups in March.
I suppose in a way it’s good. I get everything sorted out in a month or maybe six weeks and with a little luck, I don’t have to think about it again for another six months or a year. But the period of time makes life pretty hectic and the older we get, the harder these hectic periods are for us. I get tired quickly and these days, Garry wears out fast too.
Add to that all the changes I’ve been making in sorting out our utilities and this major change in the house … and there are more to come. I’ve still got to get the chimney repaired before it falls down.
Did I mention that someone apparently took a baseball bat to our mailbox? And our across-the-street neighbor’s mailbox too? And our around the block neighbor’s mailbox too? Apparently, that’s what bored teenage boys do in rural neighborhoods in winter when there’s absolutely nothing to do. So we can’t get mail delivered until we get a new mailbox and post — which we can’t do until the ground melts and the snow is gone. Which is going to be a few more days, assuming we don’t get any more freezes.
Winter makes everything somehow busier. The plowing and the shoveling and the expense of paying the plow which is huge for our small budget.
And everything will settle down in another month or so I fondly believe. Meanwhile, here are some pictures. I’ll try to get some better ones with a wide-angle lens tomorrow assuming we have reasonable light.
I visited my favorite doctor last week. She is the only one of my original set of doctors I kept when I changed insurers. Despite her not being covered directly by my new insurance, she “gets me” in a way that only someone who has known you for a long time possibly can.
I hadn’t seen her in while — she was on vacation — so we had some catching up to do. We talked about me, her, life, getting older, and how things don’t feel like they did when we were young. Mostly, we discussed how important it is to feel better.
Anyone who has been sick for a long time knows what I mean when I say:
“I just want to feel better.”
There comes a moment in time when whatever is wrong with you has dragged on for what feels like an eternity. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do yet still, you feel like crap.
Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus all the other things I forgot to mention — there comes a day when all you want is to feel better.
You really don’t care how. Whatever it takes, whatever drugs, surgery, therapy, whatever. Please, make me feel better. I want a day without pain. Without anxiety, depression, or nausea. I want to feel normal, whatever normal is. Because I am not sure I remember “normal” anymore.
The problem is that feeling better isn’t considered a medical issue. As far as doctors are concerned, feeling better is your problem, not theirs. You can’t test for feeling better. You can’t plot it on a chart.
There is no medical value to how you feel. If you can’t put it on a chart or turn it into a statistic, it’s not real and not important.
To me, it’s the only important thing. Since feeling lousy isn’t an illness, feeling better isn’t a cure. If it isn’t a cure, the medical community isn’t all that interested.
Meanwhile, the doctor keeps telling you you’re fine. Except you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Depressed. Fed up with everything.
Just three of my doctors believe feeling good is a legitimate medical goal. One is my primary care doctor, the next is my cardiologist and the final one is my shrink.
Her task is to help me feel better. “After all you’ve gone through,” she says, “that’s what I can do for you. I can help you feel more like you used to feel before all that horrible stuff happened.”
She understands. She gets it. I’m going to keep her. The hell with insurance.
When does the complexity of a problem exceed the original problem to such a degree that one would really rather run screaming into the snow than have to deal with all that “stuff”?
Let’s say it’s dinnertime. The shrimp isn’t defrosted and you can’t cook the potatoes because you are out of onions. Home fries without onions? Are you mad?
Or, it’s Thanksgiving and the oven won’t turn on. How are you going to make that big bird? Turkey stew? Seriously?
But those things are simple when compared to medicine, doctors, hospitals, and tests.
Life is a mess of complications and complexities and misunderstandings.
I told you, but you heard something else. You told me everything, but I forgot what you said or I was too drugged to understand assuming I was awake but I’m sure I wasn’t.
So … whatever you said? I have no idea what it was and please don’t repeat it. I can’t hear you.
The older I get, the more simple I want my life to be. I want appointments at a time when I can get there comfortably. Nothing at 7:00 am in the morning after an hour and a half of bumper-to-bumper traffic.
There are tests they assure me I need — medically — that are so absurdly complicated, I think I’d prefer to die.
My favorite is the one where they want to examine my brain. It had taken weeks to even get the appointment. When I got there, they’d lost the appointment. It turns out they were looking in the wrong book because they really did have it — in the right book. Which they didn’t have at the lab.
They made me a new appointment, but this time, the test was ridiculous so I was glad when it rolled around, I was sick and couldn’t go. They wanted me to be in Worcester at 6 am. Get tested. Wait for two-hours for the second part of the test. Then wait several more hours until a doctor is available and he, without interpreting the test, tells me to go home. I’ll get a skeleton version of the results probably a week later. I will be told the result is “negative.”
What does negative mean? Is that good? Bad? Do I get to actually finally talk to a doctor? Or is “negative” the whole story. Since they aren’t going to tell me what they are testing for, what are they telling me?
I said “Why can’t I just talk to a doctor and explain what happened? Maybe none of these tests are necessary?”
“The doctor insists,” she said.
“Au contraire,” I murmured because I am the patient and I insist I be allowed to talk to the doctor before testing starts. This is expensive testing because our government keeps raising the prices for tests and we are poor. So, unless someone is willing to explain what they want to test for, I’m not going.
In the end, I didn’t take any tests. My cardiologist thinks I might need them, but he wants to do some heart testing first. But he does think, as I do, that whatever is wrong is probably not fatal and not in need of expensive testing. More like a diagnostic visit.
The world is complicated. At least half the time, it’s complicated because everyone is doing what someone else told them to do. Or they think they are doing what someone told them to do, but they aren’t. Because no one is listening to anyone.
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